A lifetime of longitudinal data from the Australian Longitudinal Study on Women’s Health.

On 3-6 May 2016, the Australian Longitudinal Study on Women’s Health (ALSWH) celebrated its first 20 years. Collaborators from across Australia gathered to present findings from the study, and to discuss how researcher can be translated into policy.

ALSWH involves more than 58,000 women including three original cohorts recruited in 1996, and a new cohort of young women recruited in 2013. Over the past 20 years the study team have processed close to 250,000 survey papers, capturing information on 114 million variables. The women have also made more than 56,000 free text comments. Through these surveys we have been chronicling women’s experiences on everything from weight and exercise to mental health, life stages and how they utilise health services, with results presented in almost 600 hundred peer-reviewed papers, as well as major reports. The oldest women in the study were aged 70—75 years when the study began in 1996, and they are now 90-95, with over 4000 of the 12432 women who commenced the study still alive. Many of these women are still living in the community and describe themselves as in good health. Of the 65% of the women who died, around 30% were admitted to residential aged care during their later years. Through linked health and aged care data we are examining the women’s use of primary care, hospital, community care, and long-term care services over the course of their later life.

The study is also now at an exciting stage where we are seeing cross-over in the age of our original cohorts, and we also have a 20-year comparison in the 18 to 23 age group with our original and new young cohorts.

The information collected from women in the 1921-26 cohort of ALSWH provides a unique opportunity to understand the balance between healthy and productive ageing, supportive care, and greater levels of dependency, higher care needs and service use. Our survey data, provided by the women from when they were aged 70-75 years, allow longitudinal information on changes in health, function, activities and supports available to the women. The linked data provide detailed longitudinal information on their service use across different aged care services and settings and over time. Together this is a powerful and informative dataset that can be used to answer many important strategic, policy relevant questions about ageing and the care that women need and receive over the course of their later life.

Women in the 1921-26 cohort are now aged 90-95 years of age. Many of these women continue to participate in the six monthly surveys, providing detailed information about the health and health care needs of very old women.

Between 1996 and May 2014, 8027 (65%) of the original 12,432 participants in the cohort had died, and 2089 had requested no more surveys. Response rates for the remaining participants are around 80-90% at each follow-up. Six monthly surveys continue to be mailed to these women on a rolling basis (six months after return of the last survey, or six-months after the last mail out if no response has been received). Some participants elect to complete their surveys over the telephone, and some other surveys are also completed “by proxy”: including telephone interviews, around 11% of women relay their answers to someone else, and another 6% of surveys are completed by another person on behalf of the participant.

At age 70 to 75 years 30% of the women were widowed, and 80% were widowed by 85 to 90 years. The percentage of women living alone showed a corresponding increase from 35% to almost 60%.

Most of the women lived in a house, though the percentage has declined from 75% to 58% over the study period, while the percentage of women in a retirement village, nursing home, or in a hostel doubled from around 10% to 20%.

Changes in SF-36 sub-scale scores showed a slight decline for the mean score for mental health, and a marked decline in the mean score for physical functioning.

The percentage of women who reported needing help from others for daily tasks due to long-term illness rose fourfold, from 8% at age 70 to 75 years to 34% by age 87 to 92 years. This change was also evident in the increase of scores that assess difficulties with activities of daily living (such as dressing and bathing) and instrumental activities of daily living (such as cooking and driving).

Women were also likely to be caring for others because of that person’s illness or disability. At age 70-75, women were twice as likely to be caring for someone else (17%) than needing care for themselves. By Survey 6, this ratio was reversed, with around 10% of women aged 85-90 years caring for another person. The percentage of women who reported providing care for children on at least an occasional basis declined from 45% at age 73 to 78 years to 14% at 85 to 90 years.